*** NOVEMBER CHEMOTHERAPY CHAT 2019 ***

Hi Eileen

sounds like your having a difficult time at the moment, big hugs. You might like to look at some relaxation videos on utube.  When feeling anxious if your breathing is fast, it will make you light hded and fingers tingle.  7/11 breathing helps me, breathe in for a count of 7 and out for a count of 11, just about 3 times fixes me . You are stronger than you think. Hope this helps a little. 

Oh Eileen, I am sorry you are having a hard time. I think you need to be very kind to yourself. This IS very difficult and it's totally understandable to feel anxious. But it's not nice to feel like this all the same.

Maybe it's not something you feel like going for, but it might be an idea to ask if there are any counselling options available where you are? It might help just to talk through things with someone who is trained to support. I have recently been speaking on the phone to a counsellor through my work's employee assistance programme and this has really helped me with my anxious feelings. Sometimes it is good to be able to offload and analyse without having to worry about the things that come into play if you speak to friends of family.

I hope you feel better soon xxx

Hi I think that this is a common but unreported side effect. You are def not alone, you can message me anytime at all as I know exactly what your going though.

its a horrid rubbish shitty thing but it will pass. It just doesn’t feel like it right now.
I had my surgery before chemo, I didn’t know about having chemo until 2 weeks after surgery so it was a huge shock. However the thought of having a lymph node clearance surgery after chemo was enough to make me opt for more rads in addition to what I was to have, so I can empathise with you even if I don’t know exactly how you must be feeling.

how much more chemo have you to go yet? It does seem insurmountable I know but please don’t ever apologise for how you feel - ever!

much love and hugs xxx

Hi
Hello Eileen. Been missing you and wondering how things were. I too haven’t been on for a while. This treatment takes so much out of you it’s no wonder we feel as we do. But we know it’s fighting the cancer. I remember reading you will now most likely be having a mastectomy instead of the planned lumpectomy. That has also happened to me and getting my head round it as best I can. I met the surgeon last week and although further treatment is required and further MRI she suspects a mastectomy is in order really due to the size of the tumour -about 6cm and the size of me !!For me that will be in the second half of January.

I had the three EC treatments and now had the one Docetaxel perjeta and herceptin. Unfortunately on day 7 after that I took unwell and had a visit to NHS . I had developed a chest infection and bad throat and was given antibiotics and came home. For the past three days I have slept most of the time and don’t remember ever feeling so ill before. I have been in bed since Tuesday and have little or no energy. Things are a little better this evening. All this puts the whole situation in sharp relief and been thinking a lot.Certainly makes it so important to stay away from any risk of infection. I feel shattered having to deal with coping with this infection on top of side effects.

All the shock of diagnosis ,the waiting on all the results ,the chemo treatment and side effects, the upcoming surgery and the radiotherapy to come is such a lot for us to bear. Yes I am grateful that I am being treated but you know what I just want my life back and things to go back to normal. Do you think it ever will. Yes we have to hang  on to that fact that we will get through the other side. Children in need is on in the background and all these stories are so heartbreaking and makes us realise how many people are suffering. So I am doing my best to stay positive . We have so much to look forward to. Our grandchildren family times good times. So like lots of people here we are in this together and will support each other. 
Sending hugs to you and everyone coping with side effects. Take care Eileen. We will get through this.

Love Jojodot X

Hi

It’s good to hear from you, as I was just wondering how you were doing.  I’m so sorry to hear that you are struggling with anxiety at the moment, but I don’t think it’s surprising at all given what you are going through.  You started chemo a few days before me, and we have been under treatment now for a long time (4 months), which inevitably takes its toll.  My oncologist says that the effects are cumulative, both physically and mentally, and she told me not to be surprised if I felt low or depressed during the last few weeks of treatment.  I have felt worse during this last cycle, as it has taken me longer to recover from the side effects and this has made me feel down, so I can understand how you are feeling.  If you need someone to talk to who understands what we are going through, the Macmillan phone support service is very helpful.  I used it once right after my diagnosis when I could not sleep due to worrying about being signed off work long-term, and it really helped me to understand that what I was feeling was normal, and to get things into perspective. 

My final chemo session is next Wednesday, and then - like you - I will be preparing for a mastectomy before Christmas (I don’t have a date yet).  The timing is not great for either of us, is it - we are now exhausted and almost at the end of the chemo journey, yet we have the next huge hurdle of surgery coming up, and all at the time of year when most people are celebrating and relaxing!  Like you, I am worried about the surgery, which I think is only natural and is enough to make anyone anxious.  What I am trying to do is to take one step at the time - I am focusing now just on getting through to the end of chemo, then after that I will focus on becoming as healthy as possible before surgery (and hopefully enjoying a few pre-Christmas events), and after that I will think/worry about the surgery.  One thing I think it’s important to remember is how far we have come already.  We were anxious before chemo started in August, yet we have managed to get through almost to the end.  You have done really well during the chemo, as you have even managed to keep working, and that same determination will help you to get through the next few weeks too.  We will have challenges to face, but we will get there and we will help each other through.  I am sure that there will be another thread on this forum - or maybe we can create one - for all of us who are moving on from chemo to surgery over the next few weeks.

Whatever you are feeling, you are not alone.   I am in the same boat with you, just like several others of us on this thread.  It is tough, but then we are tough and resilient too, as the last few weeks have proven - we will get through this!

Blackcat xx

Hi and Blackcat20

Sorry your feeling anxious lately holbox123 I think Blackcat was told correct info that it's part and parcel of the SE . I'm day 17 of Fourth EC and have been moody and  cried more this week than I did at diagnosis .

I think the cumulative SE are exhausting I only just stopped the nausea and fatigue still here

I had masectomy beginning of July and it really wasn't as bad as I expected Feel free to ask any questions when you ready .

take care

margaret x

Eileen, I have already been through the mastectomy, had a DIEP flap reconstruction at the same time, six hour operation on 6th August this year and believe me, the chemo is a lot scarier, so please take comfort in that fact and you will be okay, I'm sure.  Yes, it's horrible to think you are losing a part of yourself, but if it is diseased, I told myself I didn't want any of that in or on me, so it had to go.  You will cope and just think to yourself that when its gone, the cancer has gone with it, leaving you with a new body to care for.  I was upset to begin with and tearful for several days afterwards, but the surgeon was so reassuring she said it was normal to grieve for the loss, but it does get more positive as the days go by.  Hopefully you will have someone to share this with and to help you overcome the fear and anxiety.  Good luck to you, at least you know you will get the much needed sympathy on here from everyone.  Do take heart with this knowledge and I presume you have already discussed the options with your surgical team?  Big cuddles Eileen, from me and I expect everyone else on this thread.  Just take one day at a time, like I'm doing, as I worry over my hubby in the Oncology unit, one step at a time.

 sorry to hear that you are struggling but it is perfectly normal I feel.  I've finished chemo now and have moved on to the Nov Radiotherapy thread but saw your post so wanted to say that I too got steadily more anxious and down as each cycle went on and my last 2 (I had 6 x FEC) I really had to force myself to actually go and have the last two.  In fact I was disappointed at how low I felt on my last one and actually cried in the hospital corridor afterwards.  My poor other half kept trying to help with my mood but was confused I think that I wasn't more happy that it was all over but for me it wasn't over until I was through the 3 weeks of SEs. (4 weeks clear of chemo now but still feeling the effects and had my Herceptin start postponed for a week due to low neutrophils hopefully starting on Monday if bloods ok).

Chemo does mess with our bodies and I think our mind is no exception, also it is perfectly natural to be anxious about surgery, in fact it will be more worrying for you as you've had longer to wait for surgery and have already been through the mill whereas us who had surgery first got it behind us before tackling chemo.  For me the surgery was actually the easy part and if you can do chemo surgery is much easier.

It's a shame it is going to be so close to Christmas, I don't know your circumstances but I've told all my family that I'm having a duvet Christmas because I will be neck deep in radiotherapy (either just finished or still getting treatment as I haven't got dates yet) so not getting involved in a family Christmas at all.  Bah Humbug! I know but I just wanted no stress and if I want to spend the day in my PJs without having to make myself presentable then I can without feeling I must cover my head, wear my falsie on skin that is likely to be sore at least.  But again I'm lucky with this as my kids are all grown and have their own homes and families so won't miss us too much and will look forward to next Christmas when all this will be behind us and I will be feeling fit and well.

Keep your chin up, you are doing amazing and will soon be finished and you will be on the up.

XOXO

Hi Guys,

I love how supportive this group is - I think I get myself all worried that its just me feeling like this and in reality we’re all getting a roller coaster of emotions.

I haven’t heard of 7/11 breathing I will definitely try it as slowing my breathing is something I find quite difficult when I get in a tizz. I do have an app on my phone that I use to get to sleep, but I hadn’t thought to look on U tube for videos, that’s on my to do list for today, thank you. 

I think you’re right about counsellors being a good support - my daughter is seeing one at the moment as she lost her best friend to cancer a few years ago and my husband had an slow growing cancer removed from his lung a year and 1/2 ago. So when I told her I had breast cancer I think that compounded her stress. She’s getting great support, My husband is a mental health nurse, he keeps telling me how well I am doing and how this is normal, but its overwhelming at times isn’t it. I will certainly think about getting some counselling, thank you. 

I’m so glad that you have said that these are common side effects as it doesn’t feel like I know I should feel. I have 2 more taxol on the next 2 Thursdays then the mastectomy 19/12 (3 weeks after the last chemo) Thank you x

Jojodot ah so you are in a similar position to me, I was supposed to have a lumpectomy but the tumour was much bigger on MRI than they expected. Tbh being triple negative I think that a mastectomy is probably the best thing, but saying it is one thing huh! I’m so sorry you have a chest infection, I must admit I’ve been a bit blasé about infection, going to work etc but now I only have a couple of treatments to go I am now getting a bit worried. I hope you get through the infection quickly and back on an even keel. It was interesting that you said you want your life back and for things to be normal - that is something I say often. Take care x

Blackcat20 I wish I had been told that this is something to expect in the last few weeks, then I would have been ready for it. It’s funny my other half says that I should take it one step at a time, get the chemo over with and tick it off, then the operation etc... I just like to have an answer for everything on the horizon. What a good idea to set up a group for post chemo operations we are not alone are we xxx

 Northerner Thanks for your words, I’m confident from the replies that this anxiety is just a SE and I will treat it with the contempt it deserves. I did something I probably shouldn’t have last night I watched a mastectomy on U tube - I don’t know if its made me more nervous or more at ease - I haven’t processed my thoughts yet. I will certainly be in touch when I have any questions, thank you.

Giuliella Everyone says the chemo was scarier than the operation - Ive not found the chemo so bad luckily so I cant imagine the op being easier somehow. I’ve spoken to the surgical team they wont be doing reconstruction until later as they are planning radiotherapy and say that can cause issues with a reconstruction. I have been following you on here, it must be really difficult worrying about your husband at the same time as yourself. My other half (we are not married but have been together for 29 yrs, sounds a bit silly to call him my boyfriend) had a slow growing cancer diagnosed just over a year and a half ago. He had a quarter of his lung removed and it as all clear so he didn’t need any chemo or rads. When I was diagnosed it was like a slap in the face, we had already been through the cancer journey, how unfair. But it’s right cancer doesn’t care, but everyone on here does so its a great place to come for support and comfort. Xxx

    Thank you it is good to see that its the SEs and not just me getting anxious. I still cant see surgery being easier, but everyone is saying that lol. I have decided not to let cancer ruin my Christmas, so I’m going to my daughters in Nottingham for Christmas Day. My other half (mental health nurse) has been shown how to empty the drains and he will have to do that for me over the festive period. I’m going to put my tree up on 1/12 (3 days after my last chemo) and I’m buying all the presents up front. Every year Phil and I go on our own ‘christmas do’ so on the Monday before my mastectomy on the Thursday we are going into Manchester for a trip round the christmas markets and a meal at Mowgli street foods, I booked the table this week. I’m hoping the radiotherapy isnt too hard as I think I will be back in work when I start them. Good luck and I hope you have a good christmas xxx

Thanks everyone, I feel so much better after all of the kind words. Here’s to a Side Effect free weekend xxxx

Eileen xxx

sorry to hear you are struggling. I know the ladies on here who are post surgery have already said this, but just to back it up, I have also spoken to  ladies on my chemo unit who have had their surgeries and said the op really wasn't as bad as they had imagined. They have been 1-2 months post op and already healing well and feeling good.

I have known from diagnosis that a mastectomy follows my chemo, probably early Feb, so maybe I have had a bit more time to get used to the idea, but I am looking towards that date as being a milestone as to the cancer being taken away. After that I just need to focus on getting back to normal and getting life back on track. I know it is probably naïve to think there won't be an emotional side but I am hoping that when I look at the scar, it will be a sign of what I have beaten and something that will then be in the past.

Keep on keeping going, you can do this!

Jojodot hope you are feeling better now.

So I had my 2nd docataxel/her/per yesterday. Nothing to report so far :-) so just waiting to see how the coming week compares with last time....diary at the ready! I have noticed that my eyebrows are thinning out, I think some eyelashes have gone but some are hanging in there so hopefully they don't all go. On the plus side, I got an eyebrow pencil and thought let's see how this goes.....turns out I'm more artistic than I thought at eyebrow drawing!! Quite convincing if I do say so myself!! Lol

Hope everyone has a nice weekend.

xx